A Complicated Diagnosis: Kelly’s Story Kelly Beeson
T
o say the journey toward the diagnosis of my blistering disease has been smooth and reassuring would be disingenuous. It began with an odd symptom I mentioned to my dentist when the mucous membrane in my mouth began sloughing off in thin strips. It was not painful, but disconcerting to pull long strips of flesh out of my mouth with my tongue. I was told sodium lauryl sulfate was the culprit and received the recommendation to use a toothpaste without this ingredient. After changing toothpastes, the symptom improved and I didn’t think anything else about it. About a year later, I noticed my gums were swollen and would bleed when I brushed my teeth. It freaked me out since I grew up going to the dentist every six months. My mother worked for a dentist, which resulted in my continuously being told how beautiful my teeth were. My gums looked like I had gingivitis, and I was so embarrassed. At my next appointment, I
still had the indentions from the face mask and head gear on my face from my CPAP machine. I was told it was common for people’s gums to look like this if they use a CPAP. Then came the inquiries into my cleaning habits of the machine. I left feeling my ugly gums were all my fault and something I could have prevented.
Being told I had a rare, autoimmune blistering disease resulted in many internet searches.
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Quarterly | Q2 2022
The next evening, I noticed my first large blood blister on my upper gum. I took a picture and sent it via email to the dentist, who wrote a prescription for Mary’s Magic Mouthwash and referred me to see a periodontist. It was a few weeks before I could get an appointment.
www.pemphigus.org
